Welcome

My name is Alex Dunne.

I am delighted that you have taken the time to visit my website and learn about my story.

I was born with PVL (Periventricular Leukomalacia) which is a type of brain injury.  I am the only known human in the world to have 2 specific genetic deletions in chromosomes 3 and 15 which are believed to have caused my PVL.

So many people have been so supportive of me and my family and I am very appreciative. My medical team continues to search for answers and where possible provide assistance to help me be the best that I can be. I am also so grateful for all the people who have helped with fundraising activities and of course to all the people who have been incredibly generous with their donations.

I know I will have to rely on other people to provide for and help me for the rest of my life.

I will never be able to repay this generosity, but I thank you and offer my love and appreciation. 

Regards,

Alex 

Alexs’ Story

When our son, Alex, was put into my arms, the joy Dave and I felt was overwhelming. We already had two fantastic kids, Ryan and Ella, but we waited and longed for Alex; his safe arrival was a dream come true. We took him home to Rathnew, to his brother and sister, who were obsessed with him from day one, and in the days that followed, we were in a bubble of happiness. Covid hit, and we went into lockdown seven weeks later.

There were no developmental checks for Alex, and as the weeks passed, I noticed he wasn’t easily reaching the milestones I’d seen Ryan and Ella meet. He couldn’t hold his head up or roll over, and he didn’t make the sounds I’d remembered my other two made. Friends reassured me, and I suppose I tried to reassure myself that he was probably just a lazy baby. Ryan and Ella lavished attention on him and loved to carry him, so I told myself he didn’t need to do anything, but each day, that feeling that something wasn’t right gnawed away at me.

The fight for answers began and it was and is a fight every day. Convincing doctors that I was more than just an anxious mother, waiting and pleading for appointments was exhausting. The scans, lumbar punctures, and blood tests that followed were a nightmare that seemed to go on and on, and yet no one could tell us what was wrong. I remember thinking, if I just know what’s going on, I can deal with it, yet the answer, when it came, left us with more unanswered questions. Alex has Periventricular Leukomalacia, or PVL. He has two chromosomal deletions and is, we’ve been told, the only child with this particular condition in the world. The shock and terror of that moment …I don’t have words to describe it.

So much is uncertain about Alex’s future. He can’t walk or talk, but we’ve seen him crawl and even push himself up into a kneeling position. Everything he achieves is a miracle, but we have to be realistic. He is going to have major physical and intellectual disabilities, and we are determined to give him a home suitable for his needs. Asking for help isn’t something either Dave or I are used to, but the enormity of the cost involved in modifying our house and getting physiotherapy and speech therapy for Alex leaves us with no option. Alex deserves this.

What Alex requires to support his development

  • Physio

  • Custom Pram

  • Custom High chair

  • Custom Wheelchair

  • Walking frame

  • Small adjustments to home

  • Upgraded wheelchair

  • Structural work at home to facilitate Alexs’ needs

Firstly, Alex needs love and support, which he will continue to get from his family and friends. He will also need efficient support to allow him to live a life that will never be normal but will attempt to provide him with the essential functions we all take for granted every day. 

Alex needs help in the short term. He needs physiotherapy for his flexibility and strength, his potential ability to stand, and, with the right assistance, his ability to walk, even with walking aids. He also needs to learn to be as independent as possible for his own quality of life, so for now, he can eat and drink, but as time goes by, more specific therapy will be required.

Alex needs to learn to communicate in whatever form that will take. He needs to be able to say when he is in pain and where he is and tell people what he needs and what he doesn't need. He needs to be able to share his feelings with others so that he can achieve the basic human need to coexist.

Alex will require many specific aids based on his development, which will evolve as he ages and his abilities develop or do not develop. Examples will include requiring multiple wheelchairs as he grows, walking assistance, educational/training supports, and specialized footwear, to name but a few. Many of the items Alex will need will only become apparent as the years go by.

House alterations will require significant investment to ensure Alex's future will have a space to live in that will mirror his abilities, e.g. if he cannot walk or climb stairs. He will need a space where a wheelchair or walking frame can be used safely. He will also require suitable toilet and washing facilities commensurate with his abilities. He may also need an appropriate environment to help his anxiety and calmness and a safe space away from the family and potential overstimulation.